Special Needs and Public School

My son Benjamin who will be 21 in September just finished school ... like ... forever!! HEEELP!!

It is OK. We have wonderful plans for him, which I will talk about options for in another post. I want to talk about his school experience and how public school works with special needs in this post.

Now, there are many students who fall under the label special needs. I am restricting my comments to the special needs that I know and understand a little bit about, which is developmentally disabled students, students with mental health issues, and perhaps a little bit less, physically disabled. My son encompasses a little bit of all three. He has Down syndrome, he has obsessive compulsive disorder, and he also has chronic health issues, though they do not prevent him from being ambulatory.

Now, I homeschooled Benjamin till he was 10, partly because I homeschooled my other chidren (initially because of Ben's health) but also because he spent his first seven years with significant health problems that led to scores of hospitalizations with infectious diseases, and also to scores of surgeries.

At age 10 he presented as pretty healthy and also as utterly bored with homeschooling. I had his three older siblings who were reading Shakespeare, doing algebra, and working on their Latin verbs, and Ben, while the other kids took turns teaching him math, reading, and writing, was bored enough one day to take a red sharpie marker and mark off our entire main floor bathroom (walls, doors, tub, commode, sink, and mirror) with little red tic marks -- thousands of them.  Add to that another day where he tried to see how much dog food he could flush down the commode in one flush -- the next thing he knew, public school was on his daily schedule.

We started him in fourth grade at the local elementary school. 

The school was more or less flabbergasted to get him enrolled. They clearly rolled their eyes at first, wondering why this mom shows up with a kiddo of age 10, and I think they expected he had no skills and that he would have suffered academically from utter neglect. (Perhaps they had experienced kids coming in like that in the past.)

At any rate, we had a series of meetings and established what services Benjamin would benefit from in terms of speech, physical therapy, occupational therapy, hearing impaired services. The teacher was a young enthusiastic woman with a sunny bright smile and a large heart. Ben instantly took to her, and for two years we walked him back and forth to elementary school.

He loved the activities and attention and other kids at school so much that the week after he started school, on a Saturday, we were woken up by the doorbell ringing. Outside stood a 10 year old girl holding Ben's hand. Apparently Ben had gotten up, decided it was time for school, walked over there and nobody had been there. This girl had been out, she knew Ben from class, so she walked him home. -- 

And so we had to have the talk about what it means that "it is Saturday." -- Local school keeps kids like Ben safe because everyone in the neighborhood knows him, and the few times he has been lost, people already knew him and walked him home. 


I won't detail all of Ben's years in school, but I will mention that as he grew into his teen years and became 'less cute' and more suspected as a growing-larger teen boy, while his heart was still with the 6 year olds on the playground, the one singular place outside home where he was unconditionally accepted was in the public schools he attended. Always welcomed enthusiastically by teachers, para-professionals, other students with special needs, as well as by regular students at the school. 

It is thanks to public school teachers who worked hard to connect us parents (via monthly Saturday morning breakfasts and occasional dinners associated with school plays) with other parents that I even after Ben is out of school have a strong parent support network consisting of two different groups that meet monthly. It is thanks to those teachers and that community at school that Ben fostered friendships outside the special needs classroom with students who were his regular lunch buddies in his "circle of friends", students he is still in touch with, students whose parents are still my friends. 

But more than that, public school helped Ben in so many ways. Apart from just helping him learn to read and write (on top of what my daughter achieved in homeschooling), having amazing math programs that Ben just adored (he still works through 1st and 2nd grade mathbooks just for fun in his spare time), in addition to the hearing impaired support, the PT, the OT, the speech therapy that helped us get him an excellent communication device, in addition to all this, school helped Ben

1. work well and hard in projects he was capable of contributing to

• greeting card making
• setting up and taking down dinners for school staff
• landscaping
• paper shredding
• food teams (sandwich making, cookie making -- hygienically!!)
• walking dogs for Humane society

2. School got Ben out in the community on a weekly basis, exposing the community to these students in a positive well regulated way, and helping our special needs students be active and confident in the community

• museums
• zoos 
• bowling
• parks and recreation centers
• grocery shopping
• restaurants
• Christmas shopping for parents and siblings

3. School has helped Ben regulate his emotions when he gets anxious not only by therapy and psychological intervention but by working with me, finding a strategy for de-escalation, and for giving Ben simple coping mechanisms (safe place, coloring activity, etc) that help him get through his day with a minimum of emotional upset, and a maximum of functional hours.

4. School has also accepted Ben in spite of his deficiencies, his flaws, and his -- let's face it -- utter lack of value in a free-market competitive economy. Public school has that attribute that it MUST accept all students, and it has welcomed Ben, worked within the federal law regarding special needs, and done a world of good for my son.

Is it perfect? No! I do have friends who are parents of students with special needs who have not gotten from the schools what they had hoped for their students. I will not discuss their cares here, since they are not mine.

My hope with school for Ben was that he would find a community where he could learn and grow, where he was accepted, and where he would enjoy being.

Same hope I have now for the new adult programs that Ben is going to be in starting June 1st. I want him learning, growing, accepted, and happy. If he can, as I hope he will, hold down some part time (paid or unpaid) employment with group support, that too, I hope is in his future for a few hours per week. (He calls it his new school, and that is the highest compliment Ben can bestow on anything).

In conclusion, I cannot say enough good about all the ways in which Ben was affirmed and loved by super-energetic teachers who personally cared for him and his (sometimes difficult) emotional and academic well being.  And it takes quite a person (or two) to teach those who are not only developmentally and cognitively challenged, but who, as is the case with my son, also has a mental health component that can totally lock him up and have him stuck, impossible to deal with because of his anxiety and inability to move onto the next task. 

School to Ben has not ever been 'a chore', nor was it ever something he wished would go away so he can go into summer vacation. On the contrary, he has always dreaded summer and wished it away so he could get back to school, where he is loved, affirmed, challenged, employed in meaningful activity -- where he is among friends, peers, and professionals who honestly care for him and want to be with him --- unlike, for example, church, which is a mixed bag where some accept him (bless them!!) some avoid him, and some actively can be frustrated with who he is, what he does (or what I let him do) even if they try not to mention it too much. 

Not so with school. In high school Ben  has marched triumphantly through the hallways during breaks or lunch, getting multiple HIGH FIVES or fist bumps from scores of students, most of whom are pleased to give him 5 seconds of their time, students who may not all achieve so highly themselves, but who thanks to integrated high schools have been blessed with the smiley presence of my son Ben daily. 

Our public schools serve ALL students of ALL needs, and I think this is an important point to make. In many cases there is no other place for them. The more severe and specialized the special needs, the less likely that the needs can be met at a private or a charter school. 

During the 2013-14 school year, 6.5 million students—13 percent of the public-school population—received an IEP.

Some things may be able to be run better when they are run by business men or in a business manner with competition in the marketplace, but special needs are not one of them. Special needs COST us, the tax payers, but it is what we do because we care about each other and we care that each and every citizen (rich or poor) finds a meaningful place in our society.

 "(S)pecial-education programs are costly and provide few tangible benefits for school districts. School districts are rewarded for giving high-achieving kids ... Good students raise test scores, increase the ranking of the school, and keep property values high. Special-education students are red marks on the ledger."

https://www.theatlantic.com/education/archive/2017/01/is-the-bar-too-low-for-special-education/514241/

Communication and Isolation

I chose the background picture for this blog several years ago when we went for a visit with my middle son, who had just finished a summer of basic training at the Naval Academy. The picture shows Benjamin, my son with Down's, sitting on the quay where the Severn meets Chesapeake Bay, looking down, all by himself.

Not to paint a depressing picture, Ben is not profoundly unhappy, but I do want to paint a realistic picture, and that is one where, often, Ben is alone: alone in his room writing calendars or birthday cards to imaginary friends, alone in a big room of people where everyone else is engaged in fast and furious conversations, alone with this thoughts, his feelings because they are trapped inside his mind and heart, struggling to get across the twin barriers of Down syndrome and an oral cavity physiology that makes it very difficult for him to articulate anything slowly enough that it is comprehensible to another person, and yet fast enough that he is included in the conversations around him. 

I think of how often little things bother us as people, little things make us doubt ourselves or doubt the meaning of something someone else said. Then I think of how often we turn to a friend, a spouse, a family member for that quick reality check about the little thing that bothered us, and how often that other person reassures us that everything is as it should be, that there is nothing to worry about. I think of how well that settles many a doubt, and how alone, scared, angry, or unsettled we would feel if we did not have those little reassuring conversations.

And I wonder how it feels to be Ben, Ben who can see and hear everyone else producing those many words, who can see and hear others receiving equally many words back, who perceive so keenly how much attention is bestowed on those who can converse back and forth. I wonder what it feels like to WANT so desperately to do the same, to talk and talk, and yet, so much of the time when he tries to do just that, it ends in frustration.  Frustration because the other person inevitably does not understand the words produced, frustration because the other person wants clarification, frustration because the words will not exit the mouth and instead a stream of stutter ensues, that frustrating angering stutter over which Benjamin has no control. 

And so, he turns inward, away from others, into his imaginary birthday parties for his stuffed animals who every morning turn 2, 50, 900, and sometimes 55, like his mom and dad are. One day last week, he took a ream of printer paper from my office and wrote happy birthday on every single sheet in large green letters. (That was the Sunday I was gathering papers for my tax accountant). 

He also recycles birthday cards people send him, and rewrite in black ink over the original writing:  Happy birthday, Ben the dog. Or Ben the cat, or Ben the Fox, or Ben the Koala, or Ben the lizard. You get the picture. Every single stuffed animal is named Ben. And he is their dad, and they are all his sons. The theme here is a recreation of that which he wants just as much as anyone else, independent adulthood and a family, and the birthday theme -- Well, he loves celebrations, he loves events where the focus is on him, and where can he find that more intensely and consistently than on his own birthday?

That is not to say that he does not love other people's birthdays just as much. He knows how to write cards, he knows how birthdays go with cake, candles, and presents, and so, celebrating the day of someone else is equally satisfying because he knows what to say, how to behave, and which components are appropriate for the day.

Most of all, I think what I am saying here is that Benjamin for all that he seems content with his day program, his afternoon programs, and his home life, struggles with his identity as a person with Down's relative to his siblings who have all moved away and are independent, something Ben also wants. He struggles to connect with new people in his life to replace the gaping holes left behind by siblings, who perhaps more than anyone else, understood not only his few spoken words, but also his gestures, his body language and his immediate needs in almost any situation.  -- His rituals (birthdays and calendar writing) have developed from his need to create comfort in a world where he feels both lost and left out too too often. 

As his parent, for all the joy he brings and for all the good loving times we have at home and when we are out in the community, I feel a keen loss in my own limited abilities to connect with him. I remember trying to read books to him, basic picture books or first or second grade readers where we take turns, BUT it is difficult for him to focus his attention on those. They do not satisfy. Neither the pictures, nor sitting side by side taking turns and flipping pages. They don't satisfy because he does not like to read to me, it frustrates him because of the stutter and the incomprehensibility of his speed. It does not satisfy him for ME to read aloud to him either, because it is a one sided conversation where he has no input.

What actually works best in providing him with emotional support and a good time is playing games. He seems most contented and engaged with playing Sorry or Monopoly Jr or something similar because he knows the rules better than anyone, and he knows the words one says during the exchanges in a game: "your turn", "1, 2, 3, 4, 5, 6, 7", "Sorry", "2 dollars", or "Jail". The game is unpredictably predictable, and he accepts losing, getting knocked home, or set back in some way. We play, and even if, for example, in Sorry, he wins, he insists that I play all my pieces till they are all done, and then he declares that I win too. -- The game structure is a mini-life situation that he manages because he knows every rule as well as I do. We are playing on an even turf. We are both equipped with all the vocabulary and the abilities to clearly articulate all words needed for the situation.  

When the game is over, we congratulate each other, assure each other that we are both happy, we pack up the game meticulously, putting rubber bands around cards, putting playing pieces in plastic bags. The lid is put on the box and the box is put back on its shelf. All is done in an orderly fashion. Closure is as important as the game itself. Signaling the beginning and ends of events with Ben helps him cope with when an activity is over and when a new activity may begin. Doing the same clear ritual for putting the game away helps him transition through the idea that we are done and prepares him for the next task.

When, as on occasion happens, a game is interrupted, incomplete, or if we suddenly have to rush out the door and don't put the game away nicely, he can get profoundly upset, more -- some would say -- than the situation merits. I have had people in the past tell me that there is 'no reason' that such a little thing should so greatly upset anyone.

That perspective (while I share it to some extent -- I am no saint, I can certainly get both frustrated and annoyed with Ben's rituals) is in itself limited. After all, if there were 'no reason', Ben would not get so upset. Nobody gets upset for no reason at all. There are certainly reasons. The fact that I cannot articulate a reason for Ben's upset, speaks more to my limitations than to his not having a reason. 

Ben needs rituals and closure surrounding his activities or he feels pushed around and out of control.

And we do too. Imagine your friend coming over to your house drinking tea with you, you have a pleasant time. You walk off to the kitchen to put away the teapot, and you come back, and your friend has left. Her car is gone. --- She omitted the ritual of saying, "Well, my dear, I think it's time for me to get going". She omitted the ritual of waiting for you to come back from the kitchen, the ritual of giving you a hug and letting you open the door for her to leave. -- You too would be upset if she skipped out like that.  

We have many rituals in our interactions with our friends and family, weekly, daily, hourly. We expect them to be honored in our interactions. In Ben's world of communication, he has of necessity developed his own rituals, mostly because ours are syntactically, semantically, and expressively too difficult for him to participate in, given his physical, mental, and sensory limitations. -- It is, I believe, our job as compassionate human beings, when we encounter a person with special needs to enter into his or her terms of communications, into his or her rituals, in order to engage. When we do engage, that engagement is largely a recognition that that other person is a human being. When we fail to engage (as I have done and continue to do with many a person who has limitations I do not understand), we fail, at some profound level, to actively recognize the humanity of that person. -- ... like that friend who walks out of the house after tea, without remembering to engage in the ritual of saying good bye.

Job 29:15  I was eyes to the blind and feet to the lame.

Down Syndrome and Autism

If you are a socially awkward introvert like me, you too have experienced the trauma of the party where you only knew one person.

Think of that one year at your spouse's work's Christmas party, the year when two hundred people were milling about with stem glasses of wine and teensy paper plates with mini-quiches and meatballs. Your spouse left you for a second to discuss the January budget with the accountant who only comes in on Thursdays. But he did not introduce you to anyone, so you had nobody to talk to. Sure, the people around you were all nice, and you knew none of them were out to harm you. But standing there with your back against the window, clutching your wine glass for dear life, you knew you did not belong. You knew nobody cared whether you were there or not. It was another one of those events that were to be endured till your spouse would return and magically make you feel part of something again. Everyone else was laughing, comfortably walking about, brushing elbows, feeling welcome wherever they choose to stop to join a conversation.

Second scenario -- same party, someone walks up to talk to you. It's Joe's boss. He tries to be friendly, but you know nothing about him, except that he ruthlessly and without explanation fired Joe's cubicle mate Miranda last fall. You want to be kind, engaging, smiling, and positive -- for Joe's sake. Words fail you. 

Take these scenaria with their accompanying anxieties, and imagine that this was your day every day. That almost every encounter you had with another human would feature risks, rejections, misunderstandings, disappointed expectations. After a season, you quit trying. You prefer staying home with your favorite movie, Harry Potter 3, where every time you turn it on, there is Dobby slamming his head into Harry Potter's dresser drawer, and there is Harry, saving the day for Hog Warts. 

That may, to some extend be what life often feels like for a person with Down syndrome and autism. So much of the world makes little sense to start with. When you finally make sense of something, the world keeps changing, and it is that change, and the Downs-autistic person's inability to predict or stop the change that causes him either to check out, or to melt down.

When roughly 25%  or more of  any given day spins out of my control, my mood begins to be affected.  I'm talking mundane things like toilet overflows, a late fee shows up on my mortgage payment because the Bank web site did not work, my sitter for work suddenly fell through,  I was 30 minutes late to Ben's appointment because of traffic on I 270, etc. If that were every day, all the time, eventually, I would give up or melt down too.

Less questions, less talk, more quiet, more acceptance, no pressures ... would be nice for any of us when we are overwhelmed in a social setting.